Post-Ebola: What about the Survivors?

“[We] have been alienated. We have been isolated.”  Pastor Lafayette Vinton, Ebola survivor.

In 2014, the largest ever Ebola outbreak started in Guinea and then moved into Liberia and Sierra Leone, where it ultimately killed more than 11,000 people and severely disrupted the health systems of these West African countries. Three years later, the disease has been contained, and international aid organizations are helping the governments of the affected countries to rebuild their national health systems.

But what about the 7,000 to 10,000 people who survived Ebola? Insufficient attention—and funding— has focused on helping them rebuild their lives. Yet Ebola survivors have an abundance of medical and psychological problems: musculoskeletal conditions that cause joint stiffness; ocular conditions that can lead to cataracts and blindness; anxiety disorders, depression, and post-traumatic stress disorder—to name a few—all of which require specialized medical care. In Liberia, where Ebola fatalities were the highest, there is limited expertise to manage these conditions. Furthermore, survivors face stigmatization and discrimination in their communities and in public health facilities that have limited experience providing care for survivors.

More resources need to be directed to helping survivors get appropriate health care and mental health services. That’s why the Ebola Transmission Prevention and Survivor Services (ETP&SS) program, funded by the U.S. Agency for International Development and implemented by JSI’s Advancing Partners & Communities (APC) project, has stepped in. ETP&SS is currently the only program in Liberia that specifically focuses on meeting the medical and psychosocial needs of Ebola survivors.

The ETP&SS program in Liberia has three core objectives:

1. Strengthen coordination and management of activities for Ebola survivors.
   A major accomplishment of ETP&SS has been establishing leadership for the National Ebola Survivor Network, which helps survivors advocate for their needs, and the National Ebola Survivor Secretariat, which coordinates program efforts within the Ministry of Health on behalf of survivors.
2. Improve access for Ebola survivors to health services, and eliminate stigma and discrimination among providers.
   ETP&SS provided a grant to the Eternal Love Winning Africa Hospital, one of the most widely used hospitals during the Ebola outbreak, to provide free, comprehensive services to survivors. The grant ensures that survivors can easily access necessary services. Similar arrangements with St. Joseph Catholic Hospital have recently been finalized. The program is also working to strengthen services at a number of Ministry of Health facilities in the four priority counties.
3. Build health system capacity to provide necessary, specialized health services for Ebola survivors.
   ETP&SS is working with the Liberia College of Physicians and Surgeons to bring specialists to Liberia who can provide specialized care for survivors and others.

Individuals who were living and working in Liberia throughout the epidemic were in a constant state of fear. Every person in Liberia was affected by Ebola—through the death of loved ones, colleagues or acquaintances, prolonged anxiety, and curfews and restricted movement outside the home. Certainly, those who were in Liberia during the Ebola outbreak will never forget the horrors they witnessed and challenges they faced. But the pain is often worse for survivors.

“For now, almost all is lost,” says Randall Varnie, Vice-President of Administration for the National Ebola Survivor Network in Liberia. “Almost [all survivors] lost their jobs. Some lost their relationships. Some couldn’t go to church. The [message] was that once you get Ebola you are going to die. No second chance. You couldn’t blame our people. They were afraid.”

Pastor Lafayette Vinton’s wife died while they were both being treated in an Ebola treatment unit [ETU]. The trauma of losing his wife was so difficult that the pastor ran away from the ETU. The ETU, he describes, was akin to a cemetery. “No one would go there and survive,” he says. “We would see dead bodies being zipped up in front of us.” When word got out that Pastor Lafayette had left the ETU, his fellow pastors convinced him to go back and complete his treatment. By the time Ebola had been contained, his wife, daughter, sister, and adopted child had died from the disease. Pastor Lafayette survived Ebola, but his nightmares and trauma persist

With the support of ETP&SS, the Ministry’s Survivor Secretariat and the Survivor Network are currently setting up mechanisms to map where survivors live and link them to appropriate medical and psychosocial services. These referral pathways are a crucial step toward improving care for survivors.

Much of what we know so far about survivor needs is preliminary. Survivor needs are evolving and knowledge about these issues is growing on a daily basis. As research continues, we’ll learn more about what services are needed, by whom, and the best ways to increase the quality and use of specialized health services. One thing is certain: Ebola survivors will remain at the center of APC’s ETP&SS program.

Read: Life after Ebola: Survivors Restore Hope in Liberia

Written by Rose Jallah-Macauley, Yvonne Kodl, and Pia Kochhar